A small round white pill

Every morning I have my phone alarm set to ring at 6 am. Every morning, weekday or weekend, workday or holiday, because at 6 am I take my first dose of medication. I take six different pills for my Parkinson’s disease, one to make up for not having a thyroid and one contraceptive. I prepare…… Continue reading A small round white pill

The finest compliment I ever had

Today I learnt that Tom Isaacs, President and co-founder of the Cure Parkinson’s Trust died very suddenly and unexpectedly yesterday morning. Tom is (yes, he still is) one of the most well-known PwP (people with Parkinson’s) in the world and has contributed so much to the global PD community. The world has lost an amazing…… Continue reading The finest compliment I ever had

What is in a fall?

Before my Parkinson’s had evolved into the kind with “freezing-of-gait”, or FOG for short, that now is far more familiar than I would like, I had a very hard time to wrap my head around the phenomenon: “Why do they just stand there? Why don’t they just lift their feet and walk like they did…… Continue reading What is in a fall?

Published
Categorized as In English

From The White House to the red house

Last week was a week of contrasts for me. On Tuesday I left Stockholm for New York City and the purpose of my trip was to attend a workshop at The White House in Washington DC. The workshop was on a topic very close to my heart: engaging participants as partners in research and it…… Continue reading From The White House to the red house

Neuroscience – theory and practice

I’m sure most of you have seen me write once or twice before that PD is a very complex disease, but it bears repeating: PD is a very complex disease! Let me explain to those of you lucky enough not to know first hand (or by proxy, like my husband and daughter do). If you’ve…… Continue reading Neuroscience – theory and practice

45 and counting

It was my birthday last Friday, on the 19th of February. This year I turned 45 and was honoured, grateful and very happy for all the birthday greetings that came flooding in from all corners of the world via Facebook. On days like that I really love social media. I had a very good day…… Continue reading 45 and counting

Published
Categorized as In English

For whose sake is research done – really?

I owe a lot to research. Thanks to an immense number of dedicated researchers, I have access to reasonably effective treatments for my Parkinson with (so far) manageable side effects. And of course we need more research, in all diseases and on all levels of health and healthcare. But, is the current process for how…… Continue reading For whose sake is research done – really?

BEAT Parkinson – in English

On a weekend in November 2015, Stockholm was the scene for the start of a novel (for Sweden) concept for training for Parkinson’s: boxing training! The boxing club Narva had taken the initiative together with the Parkinson’s association of Stockholm and me to invite the Portuguese physical therapist Josefa Domingos to offer the boxers at Narva boxing…… Continue reading BEAT Parkinson – in English